Growing up with a wiggly spine

I called it a wiggly spine, but the medical term is Scoliosis, meaning ‘curvature of the spine’.  When I was 12 everyone at school was taken for a screening.  Somehow, I’d missed the memo that we were supposed to come wearing our swimming costume to school so we wouldn’t be embarrassed in front of the nurses.  There were a few of us who stood awkwardly to the side and requested the nurse looked at us in private.  Everybody unzipped their dresses and lined up facing the wall.  “Touch your toes”, said the nurse and proceeded along the line.  She took three of us aside and gave us a letter.

“Give this letter to your mum or dad.”

I didn’t really have any idea what was going on, but I gave the letter to mum when I arrived home.  We visited the doctor shortly thereafter who asked me to touch my toes too.  While I stood there, half naked, wondering why doctors had a sudden fascination with me touching my toes, I wondered if there was something wrong with me.  The doctor said there was a slight curve that we should keep an eye on and sent us on our way.  I started having back pain and my mum took me to her massage therapist.  It wasn’t long before I was a year older and having weekly massage when the massage therapist told my mum to go back to the doctor.

The doctor referred us to a specialist who asked me to touch my toes in a little room he had just for toe touching.  He said my curve was an ‘S’ curve, which meant my lumbar (the bottom section) spine had grown twisted and curved and the thoracic (the upper section) had curved in the opposite direction to compensate.  He recommended the use of an underarm back brace that is made of fibreglass and strapped tightly around the body to push the spine back into the correct position.  He said Scoliosis doesn’t hurt.  I asked him whether he’d had Scoliosis.

We made our trip to the ‘braceman’, a sweet man named Gary.  He asked me to lay on what looked like a bed frame without the slats, with a seatbelt strapped down the centre from head to toe.  I had to lay on the seatbelt and hold on to the sides of the frame.  He placed a long piece of metal down the centre of my chest and stomach then pulled up a body suit.  I was cold.  Gary chatted with my mum while he washed the bandages, wetting them to activate the plaster.  He came over to me, dripping plaster on me and wrapped my body from under my arms to the tops of my legs.  As the plaster set, I warmed up.  It was hard to breathe and I wondered whether my brace would be so tight.  He cut the plaster off using a saw on the metal piece down my front and I was allowed to shower and dress.

This is what my brace looked like.  Picture courtesy: nytimes

It didn’t take long before I was wearing my brace every day, 23 hours a day.  We live in a warm climate and it was hot.  At first, I found it difficult to breathe and eat.  I would sweat and had to find a comfortable, small t-shirt to wear underneath it so the rashes I had from it rubbing on my skin didn’t worsen.  Once a day, I would take the brace off to shower and wash it.  Summer was terrible and I always felt like I smelled, but winter was also frustrating as I had come to feel better wearing my brace and it took a longer amount of time to dry after being washed.

I continued to see my doctor, with the bedside manner of the fish in the small bowl on his desk.  I had countless x-rays and extra padding added to my brace to make it work more effectively.  It didn’t seem to matter what we did – back brace, chiropractic, exercises, yoga, massage – my back still worsened.  They determined I had stopped growing when I was 16 by looking at the growth plates in my hips on an x-ray.  The doctor said that the brace doesn’t help much after someone stops growing so I could start wearing it for fewer and fewer hours a day.  My muscles were so weak that I found it really difficult to stop wearing it.  As much as I hated having to wear it, I also felt well supported.

By the time I was 17 I wasn’t wearing it at all.  I spent the first full year of high school brace free in my final year.  I had grand plans to go to university with my friends the following year and study Behavioural Science (Psychology).  While I was accepted along with my friends, they went on to uni and I went on to the doctor’s surgery.  Part of the deal was to keep having x-rays and be monitored to make sure my spine didn’t curve anymore than it had already.  Unfortunately, my curve had worsened again.  At 45 degrees, they recommended surgery.  I was very uncomfortable and not really surprised that it was worse.  They said I would have an anterior spinal fusion with instrumentation, which meant that they would conduct the surgery from my side (or front) and fuse the most curved section of my spine together using rods and screws through each vertebrae.

I went in for surgery on the 9th of April 2003 with a 55 degree curve.  My spine would’ve looked something like this (NB this x-ray is not of my spine):

Photo courtesy: Seton Spine & Scoliosis

It was the first time I’d been in hospital for surgery and I was anxious.  I knew I had to be brave though as this was an operation that had to happen!  I said goodbye to mum and dad and they wheeled me into theatre.  I slid across from my bed into a small operating table and before I knew it they’d put me to sleep.

I woke up and could feel my bed being wheeled somewhere, but I couldn’t open my eyes.  My mouth was so dry it felt like a desert.  I asked for water and they gave me ice chips.  The pain was a heavy ache in my lower back and I struggled to breathe against the tube that was put in my side to drain fluid away from the surgery site.  The nurses said that my lung had collapsed during surgery and I would have to do some exercises to help re-inflate it.  I spent 10 days in hospital and couldn’t wait to go home on Good Friday.  I really wanted to be home for Easter.  During the first few days I sat up in bed, my head spinning like I’d never felt before, and never have since.  I honestly thought I’d never be able to stand up again.  When I stood up on about the third day I had two people on either side of me for support while the room flung itself around me, it wasn’t long before I had to lay back down again.

After surgery, my x-ray looked like this (again… not me. I had my rods put in lower and with four screws):

Spine

Photo Courtesy: Gangahospital

I walked for the first time with my new back from my bed to the door, which was a space of about three metres.

It felt like I had run a marathon.

My legs worked well but it felt different to walk.  I didn’t limp as I used to and there wasn’t the twist in my hips I had been so familiar with.  I was very sick from the pain medication they gave me.  I was always tiny, and went in to hospital weighing 38 kilograms.  When I left, I weighed 28 kilograms.  My parents bought me a one kilogram Easter egg to enjoy and to try and help put some weight back on.  I was told to walk for one hour every day to strengthen my muscles.  I found, and still find, it very uncomfortable to sit.  My favourite position was laying down, where the weight was eased by the couch or bed.

It’s now 11 years later, and all the things I’d wanted to do I have done with my bionic spine.  I have learned dancing and ice skating, and naturally delivered my little son.  Having scoliosis was painful, despite what my doctor said.  It’s still painful for me.  Everyday I have constant pain and tension like a burning spear in my upper back as it compensates for my rigid lower spine.  Going through the treatment for scoliosis helped me learn what it was like to feel different, to be laughed at for looking weird, to live with bigger issues than those of most of my teenage friends, and to be compassionate.  Compassion was one trait that I found in some people who loved and supported me regardless of my state, and I learned the value in treating people with compassion.

If there are any parents of children or teenagers, or indeed children or teenagers themselves reading this post who would like to contact me with questions or for support please email me at melissabaileywriter@gmail.com.

I’d like to thank my family, who supported me through the difficult years.  My parents, who were understanding and patient watching me deal with the illness, and subsequently seeing my sister need to use a back brace as well.  L<3ve you all. xo

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